Happiness and Hope. Pain and Pills.

Month: October 2016

To all the people who said I was an “attention seeker”, “drama queen” “faking it.” Calling me names, looking me up and down in disgust, sending me disgraceful messages through social media because you were a chicken to say it to me face-to-face; trying to intimidate me at a point in my life where I was completely unaware of what was happening to my body, let alone knowing what my future would involve; living a life of pure confusion and uncertainty.

I want to thank you.
You made me more resilient.

To the teacher who wouldn’t let me wear my coat, scarf and gloves in class despite the rest of the staff being understanding and giving me permission. All I wanted to do is participate in lesson and despite having a broken body, I wanted to be the best student that I could be. I had poor circulation, blue lips and cold painful muscles and bones; you were argumentative and embarrassed me in front of class. You said I was “just the same as everyone else”. But I’m not,I’m an individual. I am me!
But thank you, your ignorance taught me to stand up for myself and it also taught me that spreading awareness about my conditions is imperative in order to educate people like you.

To all the medical professionals who have been so abusive, unnecessarily cruel, insensitive and dismissive. Shouting in my face for wasting your time, for telling me “it’s all in your head” “your pains not real-you need psychological help” “you don’t look sick” at a time where I should have trusted you with my entire life.
Thank you!
From these bad experiences you’ve given me the inner strength I need to fight the biggest battle of my life.

To a particular medic who forcefully swung my floppy, heavy, lifeless limbs off the edge of an A&E trolley during one of my first full body paralysis episodes while also having an allergic reaction to penicillin. I was scared, in pain and terrified at the thought that it would never end, yet your attitude was incredibly inappropriate and you were as violent as my chronic gastrointestinal disorders were on my already fragile body… and you got away with it.
But thanks a trillion!
Due to your rudeness and negligence although you may have slightly mentally scared me, you’ve gifted this (now 18 year old) girl with so much wisdom which I now use as one of my main tools to get through the hardship of my everyday life.

To the guy on the bus who didn’t give up your seat for me- even when I plucked up the courage to ask. My legs were shaking and about to give way, I was feeling faint, I had blurred and double vision, extremely high heart rate, chest pain plus palpitations from an autonomic disorder called POTS. I had tingling and pain shooting throughout my body from an autoimmune disease called Myalgic Encephalomyelitis (ME). I dropped my bags because my arms were weak. Everyone made the effort to stare, but nobody made the effort to help. I may have looked healthy to you but the truth and reality is that my insides are not. Under that make up and under that smile is someone who endures pain on both a chronic and acute level- it fluctuates, it’s unpredictable and brutal; there’s no cure.

Forwarding to this present day the same girl who was mocked for being invisibly unwell now has a variety of medical accessories…
I now have two nasal tubes (one in each nostril) one of which feeds me directly to the small bowel (NJ) and the other drains my stomach content out to relieve and reduce nausea and vomiting (NG) I also have a PICC line in my arm which is a long tube which is inserted along the artery to the tip of my heart which gives me access to IV fluids and IV vitamins and blood infusions if needed. I can’t swallow or eat because my stomach is paralysed due to Gastroparesis. I once used a walking frame for short distances to help me get to places independently. I was wheelchair dependant for over a year before I became completely bed-bound. Now I’ve been in hospital for over 6months after staring death right in the face.
DO I LOOK AND SOUND SICK ENOUGH FOR YOU NOW?

I still have some invisible aspects of my illnesses you don’t see: the multiple injection wounds, the delayed motility of my GI tract, the inflammation of my colon, the vision problems, the over active nerve endings, blocked signals in my brain and spinal cord, and of course the intense chronic pain that you don’t always see in public because of the ‘stay brave and cry later face’. It’s all hidden and much more.

I’ve been chronically ill for 5 years. The first 3 of them being ‘invisibly’ unwell with some of the same illnesses I have to this day. So why should it matter if you can see the pain, the suffering and the struggle or not?
For me, and 1,000’s of others. The hardest thing of all ironically wasn’t and still isn’t poor situation of our health. Its fighting repeatedly for some family, friends, doctors, the public, the media and society in general to understand and to be educated about invisible illnesses.
Some people with a disability don’t necessarily need a visible indication which screams “I’m not well”. You don’t necessarily need a wheelchair to be disabled. If you open your eyes wide enough you will notice 1 in 3 of us have an illness which can’t be seen and they are suffering.

So please, be kind. Be thoughtful and open minded. Why? Because you never know, it could be you or a close relitive in my shoes and situation one day writing this ple for recognition.